We’ve just returned from a memorial for a mother, artist, musician, wife, autism advocate, photographer – a woman whose warmth and smile lit up any room she stepped into.
Her autistic son opened the memorial by singing “Chasing Angels” a perfect song about loss. He sang and played from his heart and his talent showed through.
As friends and families approached the stage to memorialize our friend, we all had a chance to get to know her better and better through our stories.
Suddenly, I watched as a friend, a man with autism including severe social anxiety stood up and headed from the back of the room to the microphone. He had something to say.
He introduced himself as autistic and a friend of the deceased and of her family. He recounted a conversation he’d had with her about an autism charity that was developing a reputation from autistic people as disrespectful to people with autism. He was asking our friend why she would support the charity. He related that our friend admitted that to this charity, her musician son was “a dancing bear” but that funds for research and support were important and that her son would prove himself a successful musician irrespective of his autism diagnosis.
I can’t stop thinking about this entire exchange.
I’m so grateful my friend voiced the story – that the burning need to showcase this woman’s wisdom and love overrode his anxiety about speaking to a crowd.
And I can’t get this notion of “a dancing bear” out of my head.
There’s a saying of Maya Angelo
And when put in the context of “a dancing bear” it’s time for charities and non profits to do so much better. To trade the dignity of another for any amount of funds or advantage is a deal with the devil and we all know how that story ends.
We must instead focus on letting those with less of a voice be able to tell their own stories.
Gone are the days when freak shows were opportunities for the masses to see difference and laugh and rejoice because the other’s freakishness confirmed our normalcy. The cruelty of this seems obvious and yet how many times each day are we guilty of some measure of the same?
I was backstage with a group of speakers for a conference and one of the speakers is a retired infantry soldier with severe PTSD who found tremendous relief of his symptoms in an equine assisted program. He was nervous and I smiled and told him he was going to “do great.” He peered at me and said “I’m going out there to be a chicken dancing on a hot plate for these folks to make them feel better.”
I had no reply.
If the opposite of love is not hate but indifference, the opposite of compassion is pity.
A friend wrote a book and a film about his family’s oddysey journey of autism though horses and shamanic healers. He naturally started a program and invited others to experience what he and his son found through horses and neuroscience and traditional healing. People flocked from all over the world in search of a miracle. It was exciting to be sure.
But it soon became apparent that people wanted to see his son and hold him up as a “miracle child.” The son, young but wise, made it clear that he didn’t want to live in a fishbowl to be watched and studied. He wanted to be a kid who learned and made mistakes and played in rivers and thought deeply about maps and dinosaurs and birds.
Watching the family navigate how to allow their son to tell his own story while helping other families find their own path is a lesson in dignity I’ll not forget.
I’m reminding myself today that my liberation is tied up with yours and together we all have the chance to dance and be seen for our unique contributions.
Rest in Peace Christinna Guzman 7.09.60 – 1.30.24